ON BEING NON-EMPLOYED

It's more than two and a half years now since I last worked. Although I was pretty numb and in shock after my diagnosis in November 2010 and couldn't really think straight, one thing I knew very clearly was that there was no way I could carry on working while I was having chemotherapy. Part of that was the unknownness of how I'd tolerate chemo, but it was also because I knew there was no way I could carry on offering psychological therapy in my state of mind. It might have been different if I'd been working in another field of psychology, but HIV has a lot of parallels with (my) cancer: a serious, incurable and potentially life-limiting condition; where the medication aiming to control it can have very unpleasant and toxic side-effects on major organs, and decimate the quality of life; the uncertainty about when it might develop into progressively worse stages; plus the fear - even if much less likely these days for HIV - of a horrible death as more and more of the the body ceases to function. 

I knew, without even having to think about it, that this was all far too close to the bone for me to be able to work meaningfully with clients. For the first few months after diagnosis I was almost completely disconnected from my emotions, and that was how I coped; but it would have impossible to do good therapy in that state. There was also a very real possibility that client work could have stirred up in me emotions I wasn't at that time able or ready to deal with; and if I'd become swamped with my own stuff I'd have been unable to help clients. There was a danger I might have found it hard to sympathise with problems which could seem trivial compared to cancer, but been simultaneously terrified of hearing about how much worse life could get. Without being able to offer the right balance of empathy and distance, it wouldn't have been ethical to try and continue doing therapeutic work. (Probably this was why I also had no desire at that stage to meet anyone else going through cancer, feeling that if they were better off than me - such as having "only" a treatable primary cancer - I'd feel impatient with them and more isolated; but if they were worse off than me - having symptoms or pain or widespread metastases - I'd be scared of what might be in store for me and resent having to try to be sympathetic when I actually didn't want to hear about their situation.)

Wanting to be neither one extreme.......

.....nor the other

So it felt clear that taking sick leave was the right decision, and I'm very grateful for the generous sick leave that was available. However, after a year I had to decide whether I wanted to come back to the job or not, as it was unfair on the department not to be able to recruit into my post. At that time I was spending 10 days out of every 6 weeks in Germany, plus although things were relatively stable I never felt (and still don't) that I could take it for granted, and I couldn't see any way I could commit to taking on clients for therapy (which can last from a few weeks to a few months, and sometimes longer). Looking back, there was probably also a fear that I'd be somehow tempting fate, and that if I were to make commitments for more than a few months ahead I might suddenly deteriorate and have to stop again. Stopping work after being diagnosed, I threw all my energies into winding up my responsibilities tidily, either finishing with or handing over my dozens of clients, writing up detailed discharge reports and so on, and although at the time it was a welcome focus and I took pride in making a good ending, with hindsight it was pretty traumatic to leave a job of six years with two weeks' notice - and perhaps I couldn't bear the thought of having to do that again.

In addition, although I'd absolutely adored my job for the first few years, I'd been feeling increasingly stuck, as there was no opportunity for career progression. I'd known all along that there wouldn't be, but I simply couldn't imagine another job offering the same satisfaction, and it was becoming more and more frustrating to want simultaneously to leave and to stay. So it seemed wrong to go back into a job where I was beginning to feel trapped - it would have felt like a backwards step. I could have arranged to do only non-therapy work, but therapy was the main bit of the job I found so rewarding and stimulating; plus doing a purely admin role would have been a huge demotion, and given that my main dissatisfaction with work was not having as much responsibility and opportunity to make my mark as I wanted, it would have been doubly demoralising.

So I decided to leave, and overall I've never doubted the rightness of that choice. I took retirement on the grounds of ill-health (which was granted remarkably promptly, given the diagnosis of metastatic cancer), and now work feels like a distant memory: a phase which was long ago and feels quite separate from my current day-to-day life. Once in a while I feel guilty that I should be doing something productive if I'm capable of it, even just voluntary work, but mostly I'm grateful that I don't have to encounter the additional stress of work-related commitments, and that I can keep my environment mainly under my own control. Besides, it feels like a full-time job doing all my various therapies, and I don't have much energy, and I can't think of any job that would fit around the unpredictability of my situation (I feel quite superstitious, and even if I'm feeling OK today, I can't count on it being the same tomorrow, let alone next month). And although sometimes I worry that I've become too focused on my health, too caught up in a full-time patient role, overall I don't in any way want to be working right now, and it's a relief not to be expected to.

Until, that is, my practising certificate recently came up for its two-yearly renewal. Two years ago I was on sick leave so I renewed it without a second thought, but this time round I can't: to be certified as a practising clinical psychologist you must be either employed or keeping up with the Continuing Professional Development (training, meetings, conferences etc) required. As the terms of my medical retirement are that I've been signed off as unfit to do my job or anything similar ever again, there's no way I can pretend to be eligible to stay on the register.

And, totally unexpectedly, that's knocked me for six. As I said, I don't at all want to be working right now, but I guess I'd had a nice little fantasy that maybe one day if I felt well enough and confident enough that I'd stay stable, I could perhaps do some consultancy work, or run some kind of training, or do a bit of freelancing. But unless you're registered, you can't practise as a clinical psychologist (and to re-register I'd have to get a medical certificate contradicting what the previous one said, stop my benefits and change my tax status, then do a substantial amount of CPD - which is tricky to access when you're not employed - to prove that my knowledge and skills were up to date). Realistically, I can't imagine that happening. I haven't ruled it out - I know that occasionally miracles do happen - but I can't see myself in a position to go back into employment as things stand at the moment.

So I'm facing, for the first time, the reality that I'll probably never work as a clinical psychologist again. And it feels utterly devastating. I worked so hard to get onto a training course, and to get my doctorate and qualify; but more than that, the decade I spent training and in my job was such an amazing time. It opened my eyes, it helped me articulate what I felt and believed, it enabled me to think critically and see things from a variety of perspectives, and it gave me the opportunity to do work which I found fascinating, ethical, challenging and exciting. In my job I found like-minded people, with similar social and political values, and who were committed to human rights, respect for clients, and empowering some of the most marginalised people in society. 

I appreciated it all the more because during my twenties I'd done work I found interesting and enjoyable (hypnotherapy, stress management, on-site massage treatments in companies, and odd bits of reception work at a complementary health centre), but never really had any sense of vocation or ambition. In clinical psychology I discovered a profession which I had passion for, which I was good at, and which I seemed ideally suited to; and it was incredibly stimulating and motivating. I'd never before found my niche in such a wonderful way, or done work which I really believed in and felt energised and inspired by. It gave me a sense of purpose and direction, along with a strong connection to colleagues and clients, and allowed me to be part of something bigger than myself. And although I was still on a low grade because of the structure of the team I was in, I'd reached a level of skill and expertise from where my career could have flourished.

When I stopped work, I was so focused on believing I was about to die that I didn't really deal with what it meant to lose all that. It was a relief to be out of the inflexibility of the daily routine and the rush-hour commute, but otherwise I didn't really think about it, and when I did, I still felt and thought like a clinical psychologist - even now I still read the journals and talk to my ex-colleagues about psychology issues. It's true that I've become increasingly aware of how marginalising it is not to work, and although my friends are pretty sensitive, for the majority of them work is a fundamental part of their sense of who they are and their reason for getting up in the morning. So I'm conscious of feeling "different" and out of synch with my peer group, who by and large expect to have choices about their career and to have many more years to develop professionally. But I avoided thinking about it in much detail, telling myself instead how lucky I am to have family and friends, and financial stability (which are of course incredibly valuable, and without which life would be profoundly more difficult, distressing and demoralising - but they're not the same as having a career you love). I therefore managed pretty well to ignore what it really meant to me, until I had to formally declare myself as out of the game, and discovered how painful it was.

So I procrastinated for weeks about filling in the form to be taken off the register; and signing and posting it felt unbearably final. I don't think I was capable of dealing with the loss of my professional life and identity until now, so maybe it's a good sign in a way that I'm gradually coming to terms with how irrevocably cancer has changed my life and prospects. But all the same, now that I'm truly confronting the reality of it, I'm gutted.

POSITIVE THINKING REVISITED

Overall I'm doing OK, but now that I've finished my course of steroids I'm noticeably more tired and weary again, and have to pace myself quite carefully. My appetite isn't great, my digestive system gets inflamed and distended, and I have some discomfort in my liver at times. I suspect these are the effects of the radiation treatment - at least, I hope they are, and not signs of the cancer spreading. It's hard to avoid being quite neurotic about any body changes.

Over these past couple of months (since the last scan, in fact) I've been thinking a lot about the issue of how much control I actually have over the cancer. I've encountered many people who strongly believe that cancer can be influenced by your attitude, and that it's possible to "beat it' if you're determined not to give up. Since my diagnosis I've acted on the assumption that that's true: I've set about doing as many alternative therapies as I can fit in, not only for their actual effect on my body but also in the belief that if I feel I'm doing everything I can, I'll be more positive and therefore will have a better chance of being healthy for longer (a kind of placebo effect). I found it very frustrating that the Marsden doctors didn't appear to believe that you can do anything at all to help yourself, not even following a healthy diet (they believe diet can be a major contributory factor in causing some kinds of cancer, but weirdly, once you have it, diet apparently makes no difference). I found that a horribly helpless and disempowered position to be in, so it was far more appealing to follow the more hopeful messages from alternative practitioners that you can do lots to improve your chances. 

Right now, though, I feel quite mixed about that belief. From my experience it works wonderfully if you get good results, the treatments work and your scans show improvements - you can feel pride in your "achievement", take some credit, lap up compliments from people who tell you how impressive you are and how well you're doing. But what are you supposed to make of it when scan after scan shows increased tumour growth, when gruelling treatments seem not to make any difference, when reducing your life to "focusing on your health" appears to have been all for nothing? Does this mean you're not being positive enough? that you haven't been trying hard enough? that those lapses of mood when you're exhausted and afraid and resentful about how your life's turned out, and grief-stricken for the future you no longer have, are, in themselves, the reason that your body's deteriorating, because you've allowed in negative thoughts? 

(A few people have suggested that I don't know how much worse things would be if I hadn't been making all those efforts to stay well; I understand that their intention is to encourage me, but in fact it's a total heartsink. If all my efforts are having a small effect in slowing down the rate of growth, it'd mean that I mustn't slacken off at all, ever, and if I want things to improve I have to work even harder. I'm reminded again of that quote from Alice through the Looking Glass, where the Red Queen says," it takes all the running you can do, to keep in the same place. If you want to get somewhere else, you must run at least twice as fast as that!")

And it's not just flakey alternative practitioners who believe this - it comes up everywhere. Modern Western thinking tends to assume that everyone's basically in control of their life, and that we end up where we do because of the choices we make. The whole "American Dream" is predicated on the assumption that you can achieve whatever you want as long as you work hard enough, believe in yourself enough, and never give up. If you don't like your circumstances, it's up to you to change them - and this appears to be linked with the metaphor of "fighting" cancer, which is so widespread as to be taken for granted. In obituaries, dying of cancer is described as "losing a long battle" - yet dying from a heart attack isn't seen as defeat, or failure to have overcome heart disease. But what exactly are you supposed to be fighting, and how? It's your own cells which are out of control and not working normally, but then that's the case in many diseases. Yet there isn't the same discourse about "keeping a fighting spirit" for any other illnesses: no-one expects those with arthritis, or Parkinsons, or pneumonia, to cure themselves by thinking positively, or tells them that they mustn't give up fighting. 

So what is it about cancer which makes it viewed differently from other diseases? Some possible answers come from Susan Sontag, who wrote an excellent book about how we characterise and think about cancer ("Illness as Metaphor"). She notes how tumours are defined as benign or malignant, as though they have personalities and intentions of their own, which adds to the fear and stigma surrounding the disease. Cancer is talked about as if it's an evil predator, or a serial killer who could strike anyone at any time, or an insidious parasite silently spreading through the body in order to destroy it. (This is all specific and unique to cancer - no-one would ascribe sinister intentions to the plaque which clogs arteries and leads to heart attacks, or describe diabetes as the pancreas deliberately trying to starve the body of insulin....)

.

Related to this is the language of cancer treatment, which tends to be predominantly drawn from military metaphors - there's "the war on cancer"; cells which multiply are described as "invading"; cells which have mutated are described as "rogue cells" (like terrorist groups who try to subvert civilised society); the body's portrayed as "under attack"; and treatment is seen as a counter-attack, where collateral damage to healthy cells is inevitable and justifiable, and a weakened immune system from treatments leaves the body "defenceless" against cancer spread. As if cancer treatments weren't hard enough already, this metaphor portrays your body as the battleground between doctors and your abnormal cells, while you impotently watch each skirmish and claiming of territory - not a nice image at all!

Sontag argues that one reason why cancer is viewed and talked about in this way is that it's so poorly understood, which leaves it open to the projections and fears of society. Causes of cancer are probably multi-factorial, and are likely to be different for the more than 200 different types of cancer that exist. Some causes are reasonably well understood, for example environmental carcinogens like asbestos and tobacco (causing mesothelioma and lung cancer respectively); diet (some colon cancers); alcohol use (mouth and throat cancers); hormonal abnormalities (some breast cancers); or viruses (cervical cancer). However, if there's a common pathology, as hypothesised in genetic and immunological theories, it's not yet known. 

Sontag suggests that the mysteriousness of cancer therefore lends itself to theories of causation such as the idea of a 'cancer personality" (someone who's self-effacing, puts others before themselves, represses emotions, especially anger, and leads an unfulfilled life) - although this has never been substantiated by research. Sontag points out that all significant diseases, before they were fully understood and treatable, were believed to be caused by personality and lifestyle or morals: in the 16th and 17th centuries, it was believed that "the happy man would not get plague", and before the TB bacterium was identified, TB was viewed as arising from an excess of passion. Chinese and Ayurvedic medicine see illness as an imbalance in the emotional or spiritual dimension as much as the physical body (as indeed does my healer in Scotland). Thus cancer is perceived as a disease stemming from individual "defects" (whether the fault lies with genes, emotional patterns, lifestyle, response to stress or whatever), prompting those diagnosed with it to question "why me?" - which someone contracting cholera, for example, is very unlikely to ask.

At the same time, there are no clear explanations for why some people do so much worse, or better, than expected, even with the same type and stage of cancer. So it's easy to see how the idea that it's your attitude which makes the difference between whether you fight or give up, and from that, whether you'll live or die, took hold. 

Don't get me wrong, that idea can be very liberating - it offers a way of trying to make sense of why I have cancer - but the flipside is that it implies, essentially, that people get sick because there's something wrong with them or in their lives, and if some people can choose to cure themselves and not die, then it logically follows that those who do die must have not wanted to live enough, or didn't change their lives in the right way so as to restore balance and purpose or whatever. I'm not suggesting that anyone is actually blaming me for my scans getting worse and worse over the past year, but it's difficult not to feel that somehow I should be doing more, or that I can't be doing things right.

I wonder if the belief that cancer must be partly within our control is a defence against the awfulness of facing the possibility that there's nothing which can be done. I appreciate how hard it is witnessing someone go through cancer (having watched my mother die from it): how desperately you want there to be something you can do, but as there isn't, you want there to be something they can do, even if it's simply having or maintaining "the right attitude". I'm also aware that if someone with cancer is positive and upbeat and cheerful and optimistic, then it conveniently makes it much easier for everyone else not to have to face their own fears and distress so much.  

This cartoon really resonates with me because I know that I frequently go along with this subtle pressure to be positive and upbeat, so that I don't have to deal with other people's distress. By me being "strong", other people can reassure themselves that maybe it's not so bad after all, or that I've got a better chance than most because I haven't "given up". It's very hard to resist the impulse to make things easier for other people, but occasionally I try it out, and the most recent time was when my hairdresser (who knows I've recently finished chemotherapy) asked me when I'll get the all-clear. I explained that actually it's gone too far for that, and that having no more chemo to go through is because there's nothing left to be tried, not because I no longer need it. Bless her, she handled it pretty well, considering, but I find it almost unbearable to witness that moment of horror in other people; plus I felt a bit guilty afterwards because it seemed unfair to foist the details onto her. It's so much easier to make light of it, or lie, or not correct people, to spare both of us.

I'm also conscious that the uplifting "good news" cancer stories (that modern medicine is advancing day by day, that many cancers are now treatable and curable, and that noble doctors and researchers are making breakthroughs all the time) is what everyone wants to hear. Having a form of cancer where, in contrast, there aren't further treatment options, and that's deemed incurable, can feel somehow shameful, as though I represent the ugly truth that no-one wants to face and I'm throwing cold water over the cheery hopeful stuff.

So I can understand how, collectively, we want to believe that such a scary disease can be controlled by us controlling our thinking. Yet I'm coming to realise what an intolerable burden this idea of "positive thinking" places on the person with cancer. Despite knowing that well-meaning compliments on how positive I am are intended to encourage me, it can feel as though I'm expected to have the power to halt (or ideally reverse) the cancer, and that it's all my responsibility. And that if I don't manage that, then I've failed - I've been "defeated" - not stayed strong enough - given up - not fought hard enough. I hate it. 

Plus it makes every single decision - whether to make myself get up early to go for a swim or stay in bed to rest longer; whether to eat a piece of birthday cake so that I'm "living life fully now", even though some theories suggest that tumours feed off sugar, etc etc etc - into a life-or-death decision, and fuels the fear that if I get worse and die it'll somehow be my fault. It's absolutely exhausting to be that vigilant, and to feel that I mustn't ever relax or let my guard down. (Of course I realise that this pressure comes from my own perfectionist tendencies, but what I hope I've explored in this post is how social views, and ways of thinking and talking, can feed our insecurities and fears. I'm hoping that identifying these discourses will help me to feel less unrealistically responsible, blame myself less, and enjoy myself more!)

So, realising how stressful and anxiety-provoking my previous ways of looking at the world are, I'm definitely questioning and challenging things at the moment. I haven't worked out where I stand, but it feels good to be thinking, "hang on, do I really believe this?" rather than simply trying harder and harder to "get it right". None of this means I'm questioning the point of trying to be as healthy as possible, and I'm certainly not depressed, or regretting how I've coped up till now. On the contrary: compared to thinking "how my life turns out is entirely in my hands, so it's up to me to keep myself alive every second of every day", the idea "what if my life path is already mapped out, and within that it doesn't much matter what I do, so I might as well just enjoy my life" is incredibly liberating and would be a huge relief. Of course it's hard to simply choose a new belief system overnight, but I'm experimenting with "if I believed this, what would that be like?" and it's certainly very interesting.

I imagine that everyone reading this will have their own beliefs about how much we as humans are able to shape our destiny - from "we create everything that happens in our lives" through to "we're completely in God's hands / our destiny is outside our control" and everything in between - and I take some comfort in knowing that it's not just me who struggles with these philosophical and existential challenges.