RECUPERATION IN GREECE

I had a very restful week at a small village on Lefkada, one of the Ionian islands between Kefalonia and Corfu. It's not one of the picture-postcard-pretty white and blue villages, as almost all the buildings were destroyed in an earthquake in the 1950s, but it was pleasant and laid-back, with lots of greenery.

Olive trees near my apartment

Heavily-laden lemon trees

Glorious bougainvillea

One of things I hate about being single is the problem of holidays - it's great when friends are around to go away with, but pretty much everyone I know has commitments to work and / or family, caring responsibilities, limited holiday leave, or stretched finances at the moment. In my 20s and early 30s when I was between relationships I'd happily go off backpacking on my own, since I was guaranteed to meet other backpackers, and in fact I had some of the most sociable times of my life when I was travelling. However after a certain age I simply didn't fit into that demographic any longer, plus as I've got older I'm no longer prepared to share dorm rooms and live on a meagre budget - I like the odd touches of luxury these days! 

So for a few years I went on half a dozen or so holidays with Explore Worldwide, a company specialising in small-group travel, and enjoyed the advantages of going to far-flung places (such as Central Asia, the Middle East and Africa) without the hassle of dealing with the bureaucracy, and with the company of like-minded people. However, Explore insist on full insurance cover - without proof of it they won't allow you to travel with them - so that's no longer an option for me while insurance companies won't cover anything cancer-related; plus right now I don't have the mental or physical energy to want anything too challenging (much as that pains me to admit). 

So I was very pleased to discover a small UK company called Serenity Retreats, which offers self-catering accommodation on Lefkada, along with optional meditation sessions each morning. There's also the option to do an introductory course on mindfulness, but since I did a very similar course last autumn I didn't sign up for that. It's designed for solo travellers who aren't looking to party all night, and you can do as much or as little as you like in terms of exploring the island or simply sunbathing on the beach. In the week I was there, there were only 3 other guests, and we all mainly did our own thing during the day but met up for dinner in the evenings. One day 3 of us went on a boat trip around the islands, which was a nice way to see a bit more of the area, and I also had a couple of massages. 

Our vessel for the day

Swimming spot off the boat

Other than that, since I was so tired, I did very little apart from the morning meditations, going to the beach, and reading copiously. I had a lovely apartment looking straight out over the sea, and although the weather wasn't as warm as usual for the time of year, with some cloudy days and windy spells, there was enough sun to bask in at least part of every day. The sea however was fairly cold so I only swam a few times.

Not sunny all the time.....

....but a wonderful view from my apartment

My local beach, as viewed from my verandah....

....and from close up

There was a bakery in the village and a few small supermarkets, a couple of cafes, and a reasonable number of tavernas along the harbour front. In peak season it's apparently full to bursting with Greek and Italian tourists, but in early June it was peaceful and tranquil.

Fishing boat delivering the catch of the day right to the taverna!

So it wasn't an exciting week, but it was definitely restful. Spending time on my own isn't something I struggle with, but equally it's not a treat for me - and it's hard to have "fun" on your own: that's generally a shared experience. All the same, I think it was good to have slowed down without having to feel guilty about not getting things done, or else worrying about my low energy levels. I came back feeling considerably better (and reassuringly recovered from the virus of the previous week), and have been really missing the beautiful intense colours and light of the Mediterranean.

Yet another irresistible shot of that beautiful view

Sunset over the bay

OVERHAUL OF THE FLAT

Some of you will know that over the past couple of years I've been gradually working on improving my flat. It's long overdue, and now that I spend much more time at home I've come to realise how much my living space affects my mood. As these things tend to do, my ideas have snowballed, and I've ended up doing far more than I'd originally intended (as well as it taking substantially longer!) 

So far I've done a huge amount of clearing out, of cupboards, wardrobes and attic; I've set up my spare bedroom as an office space, which involved not only replacing furniture and restructuring my filing system but also fitting new sockets and internet access points, and while I was about it, replacing all the sockets and light switches; I've had mould treated and repainted with anti-fungal paint, and installed a positive air pressure pump to solve the condensation issues; I've re-insulated the entire roof and fitted new high-spec super-efficient double-glazing; I've had new shelves and cupboard doors made in the corridor and my bedroom; and I've reconfigured a lot of storage space to make better use of the limited square footage. 

However, since last autumn and the recent chemo regimen, I simply haven't had the physical or mental energy to make any progress, and the project ground to a total halt. Yet I've been constantly reminded of all the not-yet-done improvements when I see bare plaster, unpainted wood, boxes of correspondence and photos waiting to be labelled and organised, and new prints for the walls which I haven't yet put up. It's funny, after a while it seems like you stop noticing these things, but actually, even if I don't always consciously register it, it sparks off self-recriminatory "I ought to have dealt with that" or "I should sort that out", and I think it's been getting me down a lot, having constant reminders of "failure" - or at least, of daunting amounts still to be done. And there's so much choice available that despite spending many hours researching and thinking about the various options, for a long time I went round and round in circles, finding it very hard to decide what I wanted and how best to use the space I have. 

I'm always very impressed by people who are good at these kinds of projects, as it's definitely not something which comes naturally to me; and even though I've thrown out a huge amount over the past couple of years, I'm naturally a bit of a hoarder and, like for many people, letting go of things isn't easy. (I heard a wonderful definition of the difference between "stuff" and "junk": junk is stuff that you throw out, and stuff is junk that you keep!) 

Anyway, for all these reasons, I've been putting off all the smaller tasks until the flat's redecorated - which is logical, but made the whole project feel much bigger and more of an upheaval to get started on. Since procrastination has been such a feature of this process, I thought it warrants not one but two cartoons (well, actually, I couldn't decide between them, so you're getting both!)

However now, with the help and encouragement of some wonderful friends and my sisters, I'm finally on that final phase. As I type, the shelving in my living room is being replaced and extended, with built-in cupboards to hide away some of the clutter; the flat's being redecorated throughout, including painting the new MDF cupboards fitted last summer; I'm replacing the curtains in a couple of rooms (including  curtains which I grew up with in the family home all my life and which are older than I am - I loved them dearly, but it's now time to say goodbye to them!); I'm getting rid of some furniture which was too big for the space, and switching a junk-shop bedside cabinet with a nicer one; old faded lampshades are being replaced; a new mirror, shelf and towel ring will be installed to match the new vanity unit I had put in last winter; and new carpet's being laid throughout the flat. New prints and pictures will be hung, a few little repairs are being done, I'm changing the layout of my bedroom, and I'll be replacing my slightly threadbare towels and bedding. So it'll update both the cosmetic appearance, and the organisation and tidiness of all the storage systems, and should make an enormous difference.

That this is happening is largely down to my good friend Thea, who (amongst her other skills) runs a property management company and has loaned me her great team of builders / decorators, who are wonderfully taking care of all of this (under her watchful eye as project manager) to make the process as stress-free for me as possible. She and her colleague came and spent a day packing up all my books, clothes, photo albums, cupboard contents, and assorted oddments, labelling and storing them all neatly and efficiently - it would have taken me literally weeks to do that on my own, if I'd ever even have managed to summon the energy to start it at all! It's just fantastic to have such willing help and support, as well as expertise, and has made the whole process feel manageable and exciting again. (Although the plan to have a new kitchen put in will definitely be postponed for a while....)

However, it still involves a lot of work, dust and mess, so I've moved out for a couple of weeks, both so that the builders can have unimpeded access, and to spare me living in temporary chaos. 

I've spent a week staying with my sister Belinda and her family, who have been extremely welcoming and accommodating, and it's been lovely to spend some time with them. All the same, I don't want to impose for too long, and although over the last few weeks it's been exciting choosing paint colours, light fittings, carpet, coat hooks, curtain fabrics and rails, storage solutions, etc, it's also been fairly intense and at times a bit daunting. I squeezed in another trip to Scotland for a few days in May to see the healer again, and although the sessions were useful, it made me realise how how exhausted I still feel after the chemo and radiation, and how hard I find it to switch off mentally. So I decided to go away for the second week of the refurbishment, and chose the little-known Greek island of Lefkada to rest, relax and recharge. 

Unfortunately I've been quite unwell this week, with a nasty viral throat infection (I'm extremely grateful to Belinda for looking after me so wonderfully), and yet again it's been touch and go as to whether I'm fit to travel. I spent all day yesterday firstly at the GP (who told me I should cancel the trip), then having blood tests at Chelsea and Westminster, then going on to the Marsden for a second opinion, and finally getting the all-clear after talking to a very nice doctor there late yesterday afternoon. It's a horribly stressful roller-coaster: of course I want to be sure that I'm well enough to go away, and that I'm not putting myself at risk of becoming ill, but it's a risky business asking doctors, as if you're told you shouldn't go, you're then travelling against medical advice and you invalidate your insurance (not that any insurance will cover me for anything cancer-related anyway, so even if I'd cancelled I wouldn't have got any refund). So I'm incredibly relieved to have been given the green light, and am hugely looking forward to setting off this evening. 

I'm aware that there will be quite a lot of unpacking to do when I get home, as well as (I hope) some more throwing out of unneeded clutter, deciding where to hang all the new prints, re-storing things more efficiently and so on, but I hope that coming back to a nice new-looking flat and feeling refreshed from the holiday will make it not so much a chore as a rewarding and satisfying process. I'll only have occasional internet access in Greece (what a treat!) but will update you when I get back. Till then, I'm off to the sun - can't wait!

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.

THE JOYS OF SPRING

Time for a quick update I think - although it's only a fortnight since my last post, several people have contacted me wondering if I'm OK as I haven't written in a while. I very much appreciate the concern behind this, but in this case it stems from a very welcome week of rediscovering life outside of cancer and health concerns!

I'm very glad to say that I've been recovering well from the SIRT treatment, and the side-effects I worried about haven't really been an issue. If anything, it's been the long-familiar effects of the chemo which are the nuisance - I haven't really noticed anything extra from the radiation. But as it's now 4 weeks since the last chemo, those are gradually but systematically improving: I have more energy, the nosebleeds from low platelets have stopped, I no longer feel cold to the bones all the time regardless of the weather, and I spend less time fishing hair from the plughole after washing my hair; and all these things are brilliant for the morale. The neuropathy in my fingers is the one thing which hasn't improved, but my alternative doctor in Sussex has recommended a supplement (alpha lipoic acid, an antioxidant which is well-established as helping counteract nerve damage, not just for people on chemotherapy but also in type 2 diabetes) so I feel much less anxious about that than before. Of course I'll still have to wait and see whether it recovers, but I'm not focused on it and worrying like I was before.

The other thing which has made a difference is that, following the SIRT, I have to take steroids for a month (in a decreasing dose throughout that period). In many ways I hate steroids, as they give a kind of brittle, wired sensation which can make it hard to relax or sleep, but I think they've boosted my mood considerably, as well as giving me the energy to talk animatedly with the lovely friends and family who have come and visited me during this recuperation phase. They also stimulate the appetite, and although my sense of taste is pretty poor still from the chemo, which makes eating fairly unrewarding, it's been great to be able to eat decent portions and to have an incentive to eat. It sounds a small thing, but it's really broken that very negative association I'd been feeling with food over the past 4 months, which had made every meal time a chore, a struggle and a burden because of the discomfort and inflammation in my stomach and intestinal tract. And of course, eating more gives extra energy in itself.

So I'm feeling considerably better than I was a fortnight ago. I'm beginning to realise just how stressful March was, with the lack of information about the SIRT, the uncertainty about whether I'd make it to the States for the wedding, the physical toll of travelling, and the fears about how I'd cope with the radiation treatment when I was in such a depleted state after 10 cycles of chemo. It was very tough, and trying to prepare myself for up to 6 weeks of convalescence when I already felt exhausted was a pretty bleak prospect. Now that it's all over, and I've tolerated it so much better than I'd expected, and the chemo is working itself out of my system, I feel a huge sense of relief. 

I know at some point I'll have to face finding out whether SIRT has worked in stabilising the tumours, and to deal with there being no more medical options left - but that's not for another couple of months yet, so I've now got a window where I can actually enjoy life again. Now that I'm coming out of it, I can see how throughout the chemo my "normal" was feeling a bit rubbish, and when you're not feeling great physically it's almost impossible (in my view) not to feel a bit low mentally too. It's only now, when I've started to actually find myself thinking "ooh, sunny day, how lovely", or "maybe I'll do x y z that I've procrastinated over for so many weeks / months" that I can see how depleted I've been and what a struggle it's been. (Of course, my usual caveat: I know very well that many many people have a much harder time on chemo than I've had, with serious health complications and painful and / or distressing symptoms - all the same, that doesn't diminish what it's been like for me.) 

I can also see now to what extent my world had shrunk down to medical and health appointments, keeping up with close friends, and making it through orchestra rehearsals - but even within that, every day was an ongoing series of anxious decisions - what to eat; whether I could face another cup of green tea to get up to my required 2 litres of fluids a day; whether the positives of seeing a friend and feeling cheered up outweighed the negatives of being tired by the effort of socialising; whether I should distract myself with the easy options of reading or watching TV or do nurturing things like writing my journal or meditating. Running through everything there were endless "shoulds" and worries about choosing the right thing. I'll say more about all this in another post, as it's something I've been thinking about a lot. 

But for now, even though I still don't have a huge amount of energy, I'm aiming to lighten up and enjoy things in a way that I just couldn't during the chemo months. Of course I'm not the only person who's found this a long, dark, cold winter - but the metaphorical elements of new light, life and energy appearing with the spring has a particular resonance for me this year. I haven't been doing anything special, and nothing's dramatically different externally, I've simply been able to take  pleasure in normal activities, and be interested in life again. Of course there are still days when I'm weary, stressed, low or frustrated, but it's just fantastic also to have times when I find myself spontaneously feeling uplifted, or enthusiastic, or humorous, or optimistic, for no particular reason. I like it!

And even more precious new life....

Xavier, my friend Sheila's son, born in February

My cousin Amanda and her husband Jon's new baby, Freddy, born 3 weeks ago

TREATMENT COMPLETE!

I'm sorry that it's taken me a while to update this...

I'm glad to say that the SIRT treatment (Selective Internal Radiation Treatment) all went ahead smoothly last Tuesday. As far as I know it all went to plan, but they gave me a higher dose of sedatives this time and I was very sleepy and woozy throughout most of it (which I was quite happy about! - as with the first part four weeks ago, I spent around two hours on the operating table and then another hour having scans to check all was as it should be, so dozing my way through it was very welcome.)

I spent a further night in the Marsden and was discharged on Wednesday afternoon. I'm on some follow-up medication - steroids, to prevent inflammation in the liver, guard against any allergic reaction to the beads, and give the immune system a bit of a boost; antacids to protect the stomach and gut from any adverse effects; and a drug to prevent any irritation to the gall bladder (which can get inflamed if any of the radioactive beads get into it) - and will have regular blood tests over the next couple of months to monitor how things are going. There'll be a scan done in 3 months and from that they'll be able to see what the impact of the SIRT has been. It feels a big relief to have some time without as much intensive contact with hospitals as I've had recently.

In the meantime I'm feeling better than I'd expected (or feared) - tired, and not wanting to do much, but thankfully no nausea or pain. Over the first couple of days I felt some sensations of discomfort at times in my liver, but nothing major, and it was kind of reassuring to feel that the radioactive beads were doing something. The radiation wears off within a week or so, and I'm glad to say no-one treated me as if I was contagious!

Close friends and family have been wonderful in setting up a rota of daily visits, to help out with shopping and cooking, and to provide moral support and company while I'm recovering, and that's boosted my mood immeasurably. Resting and doing very little can be good physically but can also feel quite depressing and limiting, as I found out in the week before the procedure - there's definitely a balance to strike. So I feel lucky to have such good support around me, and very relieved that so far I seem to be tolerating it pretty well. 

The challenges of the last few weeks have forced me to question where I'm at and  how I go on from here, so there may be a couple of more reflective posts coming up at some stage, but I'll leave it here for now. Thank you all again for your messages of support and good wishes - it means a great deal to me.

YOU COULDN'T MAKE IT UP...

A bizarre and very unexpected twist in the story! I went into the Marsden on Monday early evening as planned; I had preliminary blood tests done to check that everything was OK for the next day's procedure; I was given antacids to protect my stomach, and intravenous fluids overnight, as I had to fast from midnight. On Monday morning I was given anti-sickness medication and steroids (to prevent an allergic reaction to the radioactive beads), then, with a nurse escort, I was taken in hospital transport down to Chelsea & Westminster, arriving feeling a little nervous but psyched up for the treatment...

...only to discover that in C&W's diary, I was booked in for next week, not this. 

... and seven days

Clearly there'd been a major breakdown of communication between C&W and the Marsden, and somehow the fact that they each had different dates for the procedure hadn't been picked up. Everyone was terribly nice and extremely apologetic (while we were waiting for transport back the nurse bought me breakfast!), but it still means that I have to come back next week. (The beads are specially ordered from manufacturers in Australia, and go via Germany to be activated with radioactivity, then are delivered - presumably in a well-sealed container - to the UK within hours of the insertion, so there was no way the procedure could be brought forward.)

I was fairly assertive with a Marsden SHO, and later on the phone with my specialist nurse (I think the problem arose as she'd just come back from sick leave but it wasn't clear what her colleague was still dealing with on her behalf and what she was assumed to have picked up), but in fact I was rather relieved not to have to face the treatment just yet, and to have more time to recover from jetlag and chemo. It was nice coming home early, and feeling relatively well and independent - a bit like an unexpected day off work when it snows! So, apart from having to rearrange kind friends and family who have set up a rota to look after me, I'm treating this week like a "bonus week" to relax and take things easy. For a control freak, this seems a remarkably sanguine reaction! yet it doesn't really make much difference - it's just one of those things. I guess we never know if things happening at a different time would have changed the outcome.

So thank you for the good wishes that many of you have sent me, and I hope you've still got some left over for next week! It'll be the same timetable: going in on Monday afternoon, the procedure done on Tuesday morning, and a night or two in the Marsden before coming home to my lovely team of helpers. Thoughts, prayers, healing vibes or whatever you believe in all gratefully accepted!