FESTIVE GREETINGS!

I guess this is my version of the "round robin" newsletter - something I never thought I'd do! - although it's in no way a summary of the year, just an update on the last few months. In spite of the relentless negativity of my previous post, alongside the tough patches I've also had some really enjoyable times during this chemo (and I've put in lots of cheery photos to prove it!). Culturally, I've gone to a couple of great exhibitions, including the Wildlife Photographer of the Year and an Ansel Adams retrospective (followed by hanging out at the museum cafes!); I had a lovely evening seeing a friend who I have sporadic violin lessons with perform a wonderful baroque programme at the Wigmore Hall; and with friends I've discovered or re-explored a few  of London's wonderful parks. 

Reflective sculpture in Holland Park

The Japanese Garden in Holland Park 

Autumn colours in St James' Park

I've had some great times with family, one of which was taking my nieces for a riding lesson as their birthday present - a hobby which I adored in my early teens and which it's a real pleasure to see them enjoy too. (Sorry for the poor picture quality - my mobile phone is an ancient model only suited to, um, making phone calls.)

Frederika (12)

Ingrid (7)

Last week I went ice-skating at Somerset House with my sisters, nieces and nephews, which was great fun (and I was delighted to find I had the stamina to skate the full hour, albeit with lots of chatting). My cousin Amanda joined us - being pregnant, as a non-participating cheerleader and official photographer.

Me with my sister Annabel (back left), mother of Frederika and Ingrid,
and Belinda (second from left), mother of Eddie (11) and David (6)

Me and Frederika

With our cousin Amanda, third from right

I've also had the pleasure of meeting several friends' babies. A few years ago I found it quite poignant to spend time with babies, as I'd always assumed I would have children myself at some point, yet it never happened for me. Now I'm much more comfortable about it - for a start, having a family to look after would have made my current situation much more challenging - and, because so many people I've met through the cancer world have died (around 20 at last count), I find it really moving, inspiring and life-affirming to see, and hold, and marvel at, the preciousness of new life. 

With Tommy, the son of my friend Maria from psychology training

Etta with her mum Mo, a friend through the orchestra

With Austin, the son of work colleagues / friends Karen and Annette

Friends have been, as ever, been an invaluable source of support, and even when I've not been feeling great (or especially) it's been really important to have not only sympathetic ears but also the chance to be interested in other people's lives for a change. It's felt a real privilege to be able to support others through their own challenges and not always be leaning on them; it enables me to feel that despite coping with my own difficult times I still have something to offer - I've learnt that unless friendship is truly a two-way process it's easy to feel like nothing more than a burden and a worry for those you care about. More lightheartedly, it's wonderful having an array of people in my life who cheer me up and make me laugh (and, even more impressively, laugh at my jokes), as well as giving me the opportunity to have fun - after our December concert I recklessly stayed out till the early hours at a party (I'd almost forgotten what that's like!), and it was great to ignore for once what I "should" be doing for the sake of my health and to socialise like old times. 

In addition to my circle of close friends, since the summer I've caught up with several old friends I hadn't seen for a long time, including a friend from my teenage years in Brighton Youth Orchestra, one from my first years in London in the mid-90s who now lives in Grand Cayman, a Dutch friend who I first met backpacking in Tibet, and another from the wonderful big-group skiing holidays of my 20s. It's been lovely to reconnect with these people from the various different stages of my life, and to revisit those formative experiences and friendships. I feel very blessed to have so many people who care about me, and to be in touch still with so many who have shared significant (and fun!) stages of my life; it reminds me that the challenges I'm going through now are in no way the sum total of who I am or what my life means, and that's an incredibly important realisation.

I apologise for not sending any Christmas cards again this year - it seemed a good way to reduce the lists of "shoulds" in my head and conserve my energy - but I've been delighted to receive news and good wishes from so many people in my life. Thank you to all who keep in contact, whether frequently or sporadically: I really appreciate you taking the initiative to stay in touch as I find it much easier to respond than to initiate communication. 

I'll be spending Christmas at my sister Annabel's, along with my dad and his wife Phoebe (my other sister Belinda will be with her in-laws). As an agnostic, the main significance of Christmas for me is closer to the pagan concept of celebrating light, warmth, love, joy and abundance during the darkest and coldest time of the year when it's hard to imagine the spring. This idea resonates particularly strongly with me at the moment, during the toughest few months I've had since my diagnosis and when there's no real end in sight: what better time to celebrate the simple pleasure of being alive right now, by sharing food, drink, gifts and time out from the worries of our everyday lives with those I love. Despite what I'm dealing with I still have much to be thankful for, and to treasure, and at the risk of sounding sentimental this feels an appropriate time of year to appreciate everything that's good in my life. 

Thank you all so much for reading this - sharing my ups and downs and supporting me in so many ways, including your thoughts, prayers and good wishes. I hope that all of you, wherever you'll be, and however and whatever you're celebrating, have a peaceful and joyful Christmas, and I wish you all possible health and happiness in 2013!

DARK WINTER DAYS

It's been nearly a month since I last updated this blog and a few people have contacted me to check I'm OK - sorry for the gap. Overall life isn't too bad with me, all things considered. The new chemo regimen is slightly easier to tolerate than the previous one, and there have been no dramatic, disfiguring, or dangerous side-effects (which certainly isn't always the case, so I try and keep things in perspective). 

However, I have to admit that I'm finding it quite tough going at the moment. The main effect from the chemo is on my gut, which varies from uncomfortable to painful most of the time and can get quite distended and tender. Lying flat, and using hot water bottles to ease the sensation of achiness, help to some extent, but it's rather wearing, and it can be hard to get comfortable at night (though I'm lucky that I sleep pretty well all the same). My appetite is a problem: I do get hungry, but find it difficult to face food, and quickly feel unpleasantly full. I'm learning to manage this by eating small amounts more frequently rather than trying to have proper meals (including carrying around snacks with me all the time, as if I was feeding a toddler), and by using meal replacement drinks when necessary to keep my energy up, but there's not really much pleasure in eating, and the planning and effort required to ensure I get enough fuel feels a constant daily chore, and that's pretty hard on morale. 

Fatigue is an issue on this treatment too, far more so than I've had before - I manage to do most of my usual things, but am really having to stop and rest in between, and tiredness hits me very suddenly. Walking is OK but standing (e.g. on busy tubes, or waiting in queues) is very wearying; and my mental energy and concentration is a bit limited too, so it can take a long time to get round to acting on good intentions (such as updating the blog). 

Other niggles from the chemo are that I feel the cold quite badly and have to wear multiple layers of clothes even indoors, and I never venture out without gloves otherwise I get tingling and pins and needles in my fingers even on relatively warm days. Of course that's not a huge hardship in itself, but it's a daily reminder that I'm more fragile at the moment, and that I have to think differently from in the past when I took pride in being hardy and strong and not "precious" about my body. I've also had mouth ulcers on and off (chemo affects all rapidly dividing cells, which includes the gut lining and mucous membranes such as the mouth), which doesn't make eating any more appealing. And - ominously - the last time I washed my hair a lot more than usual came out, leaving me dreading it thinning right out like it did in spring 2011. 

None of these things are horrendous or life-threatening, and I'm fully aware that many people have a much harder time on chemo than I'm having, but all the same the combination of them all makes day-to-day life feel rather a struggle. I've been busy socially, which is lovely, and a very good distraction from preoccupation with my gripes (pun fully intended), but I find it hard to get the right balance. When I'm with people I tend to rise to the occasion and act (and often feel) like my old self, but when I get home I'm often exhausted and worry that I've overdone things. Friends have been very good about coming to me or my part of town to save me extra travelling, but it's sobering to realise that even sitting and talking for a couple of hours takes it out of me. I try my best to accept that this is simply how things are at the moment, but there are days when I really miss being able to just plan and do what I want without questioning my strength, and not having to think about everything and gauge whether it's good for me or not.

Added to this, there have been some unpleasant things to deal with, including some very complex orchestra politics sparked off by our conductor walking out 10 days before our November concert. Feelings ran high about who should have done what to foresee or prevent this (and being on the committee I couldn't not be caught up in the accusations from both sides), plus it was very time-consuming (and at times emotionally draining) to reach a consensus on how to sort things out, find a replacement and make alternative arrangements for the rest of the year. So much for my determination to step back and do less....

I've also had a falling-out with my acupuncturist (or perhaps it would be more accurate to say that she had a falling-out with me). I'd been seeing her since very soon after I was diagnosed, and she did amazing treatments, way more powerful than any acupuncture I'd ever had before; but we always had a slightly uneasy relationship, and it came to a head with her behaving in a very unprofessional way, after which I knew I couldn't carry on being treated by her. I'm now researching other practitioners and feel quite positive about making a new start with someone else, but while it was going on it was all very unsettling and disturbing. Despite my capacity for bolshieness I hate there being bad feeling, and I rarely have confrontations with people - and if I do I generally try very hard to put things right - so having two incidents in two months where for various reasons there wasn't the opportunity to smooth things over or repair the relationships has been very uncomfortable and a real challenge for me.

OK, I know you want to know how I'm doing, but I think that's enough complaining for now!

So I'll post again before Christmas to summarise the good things (yes, there are some!) in a separate update, and thank you for bearing with me in my splurge of woes!

NEW OLD CHEMO, AND NEW GADGETS

I started the new regimen of chemo yesterday - one of the drugs is exactly the same, and the other is the intravenous version of the tablets I was taking for the previous 3 cycles, but it apparently counts as a new regimen and I had to sign a new consent form. The main difference is that the second drug is given over 48 hours, so after the 2-hour infusion of the first drug at the hospital, I was hooked up to a small portable chemo pump which I'll carry around with me till Friday lunchtime. 

This pump slowly infuses the drug via a tube into my port (for more details about ports see http://en.wikipedia.org/wiki/Port_(medical). I had the port fitted when I was in Germany last summer, and although at the time I was very ambivalent about having a permanent device, it's been a godsend, making these kinds of treatments much much easier than having to have an IV line inserted each time.)

Since a picture is allegedly worth a thousand words, I hope these photos will give you an idea of the system:

The bottle contains a kind of balloon with the chemo inside. The pressure around it slowly forces the chemo out through the tube and into my vein. Over the 48 hours the balloon empties / deflates completely, so you can see when it's finished. It's made of plastic and pretty light.

The port is a few inches below my collar bone (I asked them to put it on the right so that it wouldn't get in the way of holding the violin), and the needle's not visible when wearing normal clothes. In the photo below the length of tubing is on top of my clothes but of course mostly I have it inside my top so that it doesn't get caught.

The needle is covered with a waterproof dressing, and is pretty secure so it can't be accidentally pulled out.

The hospital provided me with a carrying pouch for the pump bottle, which you can either clip onto a belt loop or wear as a belt. It's hardly invisible, but it's not too obtrusive. I feel a bit self-conscious about it out in public but at least it doesn't scream "chemotherapy!" 

The whole system hasn't been as bad as I'd feared - it's a bit of a faff but pretty manageable. As the drug goes in so slowly, I haven't felt any particular effects (in fact it seems that it's often the second week when I feel worst, perhaps because that's when the drugs are breaking down in the body). But as this is a new regimen, maybe it'll all be easier this time. You have to hope!

NEW PLAN (AND A BIT OF A RANT)

I've been incredibly touched by all the comments on the last couple of posts, and by the texts, emails and phone calls expressing so much empathy, support and encouragement. It feels wrong not to reply to them all individually to say how much I appreciate them, but they've really made a difference: it makes me feel much less alone. Thank you so much.

I spent a fair amount of time this last week gearing myself up for seeing the consultant, Professor Cunningham (I'd asked to see him in person this time, although I've only met him once, very briefly, just before I started treatment back in November 2010). I marshalled all my arguments as to why they shouldn't give up on treating me; I looked up all the drugs the surgeon in Frankfurt had used (always a cocktail of three or four, with the main two staying the same but alternating the use of several others) which had seemed effective in controlling the tumours and which I could ask them to try now; I researched bile duct cancer (which is what they think the most likely source of my primary tumour) and made a list of all the drugs used to treat it so that I could counter any argument that "there are no other established treatments"; I talked with various people about how much right I have to insist on any particular treatment, and how best to go about making it a constructive conversation.

Then the day before the appointment I was phoned by the doctor I'd seen at the beginning of the week, who told me she'd discussed my case with the consultant, and he'd decided to carry on with the current chemo but replacing the tablets with the intravenous version. The plan is to do another three cycles - providing I can tolerate it OK - and then do another scan. This will provide a comparison with the recent scan, and give a clearer idea of whether these drugs are effective or not. She'd made me appointments for next week (blood tests on Monday, then chemo on Wednesday), and suggested cancelling the appointment with the consultant since he would simply repeat what she was telling me. I agreed that the plan makes sense, and that there seemed little point in keeping the appointment.

I must admit that I'm nervous about continuing: although I hope that the intravenous version of the second drug will avoid some of the unpleasant side-effects on my guts, I'm not yet sure how easy it will be to manage being attached to a chemo pump for two days. The cycle will be once every two weeks instead of every three, so it means less recovery time between doses, and after having a week off and feeling considerably better for it, it's daunting to go back into treatments which have left me feeling so washed out. All the same, this is certainly what I was hoping for - I'm very glad that they're prepared to take a bit more time to assess the efficacy of these drugs, and I'm extremely relieved to have the structure of treatment for a few more weeks. So I'm happy with the new plan. 

What's been interesting is that alongside the relief has been an element of anti-climax in being told, essentially, that we're back to business as usual, after such a challenging week emotionally. I had some flashes of anger with the doctor who'd told me that I might have reached the end of the road at the Marsden, and for having gone through all that fear about this being the beginning of the end, when perhaps it wasn't strictly necessary. (Although I imagine that this will be a conversation which will happen sooner or later - maybe in 6 weeks' time at the next review - so I'm sure my research and preparation haven't been wasted.) 

But I think the main reason for my annoyance is that this has highlighted a low-level but ongoing frustration with my medical team: feeling that my views aren't really taken into account. A friend recently reflected how my default position is to challenge my doctors, to argue with them, to assume that I need to work hard to get across my wishes and opinions. She's right: I'm not always as bolshy as that might imply! but it's true that I don't take for granted that I can trust them to know what's really best for me. Part of this, I'm well aware, is my own emotional pattern: fearing that if I don't shout loudly enough I'll be overlooked, or dismissed as unimportant, or forgotten about, or not really thought about carefully (of course, in true psycho-babble cliché, these are all variations on fears of being abandoned). Added to that, I'm also aware that I find it very hard not feeling in control, and that wanting to debate and challenge my doctors is partly about not fully accepting being in a patient role. 

However, the model of care at the Marsden also plays a part in this dynamic. I have no doubt that all the doctors there - from consultants to registrars to junior doctors - are extremely expert and competent, and the nurses in the chemo unit are without exception pleasant and friendly as well as skilled. What's lacking is any continuity of interaction; any sense of anyone getting to know me; any reassurance that somebody is holding in mind the bigger picture of me and my treatment journey, rather than just the part that they're doing today and which someone else will do next time. 

I've rarely seen any doctor more than once (the maximum was three times, twice of which was on consecutive days' ward rounds when I was in hospital in June 2011, and the third time by chance in clinic later), and I must have seen at least two dozen different doctors over two years. All are efficient and knowledgeable - they check for side-effects before each chemo session, and at each review appointment they feed back to me my scan results, or whatever decision has been made in their team meetings - but no one person knows anything about me except what's in my notes and whatever the scans and blood tests show, along with the report of whoever saw me for the most recent 10-minute consultation. The consultant I'm under has ultimate responsibility for me, and I don't doubt that his decisions about my treatment are based on vast clinical experience, but he wouldn't recognise me if he saw me, nor I him. 

Of course I realise that every patient can't see the consultant every time, but the lack of any consistent contact with one - even relatively junior - doctor who knows me leaves me feeling as if decisions are made solely on technical data about the inside of my body, without any interest in my thoughts or opinions as a whole person living with a life-limiting illness. It's not that I believe being a "case" rather than a "person" compromises the effectiveness of the treatment prescribed; it's simply that the process feels pretty impersonal. I have no doubt that I respond to all this (often in a knee-jerk way, and not always helpfully) by arguing or discussing or asking detailed questions, not only for the actual information but also in order to feel noticed, to make sure I'm taken seriously, and to reassure (or convince) myself that I, Sylvia, am actually involved in this process and not simply a passive diseased body.

There was one notable exception - the registrar who I saw at my first appointment at the Marsden after being referred on from Chelsea & Westminster, where I was diagnosed. I saw him for the second time on the day of my first chemo, when I was feeling extremely scared and vulnerable and overwhelmed (though, typically, trying hard not to show it), and I remember he took both my hands and said to me, "don't worry, we're going to take great care of you". I was hugely warmed and comforted by that, and thought how glad I was that he was my doctor. Oh, how naïve: I never saw him again - presumably his rotation ended soon afterwards. Since then, many doctors I've seen have taken lots of trouble to provide "good care" - e.g. making copies of reports for me, accessing super-detailed results I've asked for, answering my endless questions - but it's all been with professional  efficiency rather than warmth. "Care" is very different from being cared about... Similarly, several of the nurses recognise me by name, and some remember that I used to go to Germany, but it's a big unit with a lot of staff, and I'm generally attended to by different nurses each time I go for chemo.

I appreciate that this sounds very critical, and perhaps ungrateful and unfair. I'm aware that the Marsden is renowned as one of the top cancer hospitals in the world, and that I'm incredibly lucky to have free high-quality medical care there. In my defence, perhaps I feel especially strongly about this issue because of having worked for six years in a medical setting as a psychologist, and therefore having thought a great deal about patients' experiences of medical systems. 

Certainly at work I had differences of opinion at times with my doctor colleagues (who are trained to think in a very different way from psychologists), but I always hugely admired and respected their attention to building collaborative relationships with their patients. Naturally, for psychologists, establishing a good relationship with clients is the most important thing, so of course I'm biased, but part of what I liked about HIV medicine was how it was readily acknowledged that people's emotions and ways of seeing the world, and how they relate to doctors and to their condition, have to be taken into account, and taken seriously. Those factors affect whether patients can tell partners or family about their HIV status, whether they use condoms or not, whether they blame themselves if they become unwell, whether they take their medication or avoid it because it's a reminder of HIV - and whether they admit any of this to their doctor. So doctors need to get to know their patients, to understand what their fears and concerns are, to build trust that they'll be listened to and not judged, so that patients know their treatment is being done with them, not to them. The clinic was designed so that patients always saw the same doctor (unless they requested a change, or for emergency appointments), sometimes for decades; and this meant that doctors supported their patients through all the milestones of diagnosis, starting antiretroviral therapy, treatment changes and treatment failures, episodes of illness or crisis, as well as significant life changes unconnected to HIV. I was very heartened to see how effectively the doctors embraced this principle of treating patients as people, and how much that enhanced patients' experiences of their treatment (and sometimes other areas of their lives too).

If I was convinced of this when I was a healthcare professional, when I became a patient it was strongly reinforced by my experience at the German clinic, where I saw Dr Herzog two or three times every visit, so I got to know him, and he got to know me, quite well over my year of treatment there. It meant a huge amount to me that not only could he remember my medical history without looking at my notes, but he also knew I play the violin, and find irreverent humour funny, and wanted reassurance that I was doing enough alternative treatments, and longed to go skiing, and needed to be given permission (or ordered!) to relax. It made a huge difference to how supported I felt and how much trust I had in him, and it seems a shame that this isn't better acknowledged at the Marsden. 

I appreciate that it's a big teaching and research hospital, where staff presumably have fantastic training by being able to move around departments frequently, and that this increases their skills and competencies; but the downside for patients is not seeing the same doctor throughout even one course of treatment (assuming that my experience isn't unusual). Similarly, a specialist nurse told me that their weekly team meetings involve up to 50 clinicians from different disciplines (oncology, radiology, surgery, academia etc), so they draw on a huge wealth of expertise; but almost all those present will be talking about patients they've never met and never will. It's ironic, and sad, and frustrating, that many of the Marsden's sources of "excellence" actually create what can feel like a fragmented, authoritarian and impersonal system.

I'm sorry for indulging in a bit of a rant. Overall the Marsden's done very well in looking after me, and I'm aware it's not their fault I have cancer and have to lead a life I don't really want - perhaps I just needed to let off a bit of steam, and they're an easy target. I know I can't attribute my confrontational attitude solely to everyone else's shortcomings, tempting as it is - it can't be easy to deal with sceptical control-freak argumentative patients like me! (even though I also try very hard to be liked, which must balance things out a bit) - but I'm pretty sure their system doesn't massively help foster trust either.

So you can see why, although I was very relieved to be spared yet another trip to the Marsden, and although I'm suitably grateful to have a treatment plan sorted out for me, I also felt a bit deprived of the chance to actually talk to the man at the top who has so much influence over my life. (Not God, the other one.) I guess I'll have to leave it for another time - but as you'll have gathered, he definitely hasn't heard the last of me!

UNCERTAIN TIMES

The last couple of months, since I came out of hospital, haven't been easy. It's been a busy and stressful period, with a political crisis in the orchestra I play in (which has taken a great deal of time and emotional energy to deal with), and my energy (and sometimes my mood) have been pretty low at times. I've continued to struggle on the chemo: towards the end of the second cycle I had to stop taking the chemo tablets for 24 hours because of stomach pains, and in the third cycle those problems returned within a week, along with an inflamed gut and very little appetite. Again I was advised to stop taking the tablets (supposed to be for 14 days in each 21-day cycle), but after 48 hours things weren't much better so I was called in to the hospital's assessment unit. 

After 5 hours of blood tests, X-rays, more blood tests and various consultations it was decided that I shouldn't finish that course of chemo, and would be reviewed the following week. I was pretty anaemic and my platelet count was very low (platelets are involved in blood clotting, so at low levels you're at risk of haemorrhage), and at one point I was afraid they'd want to admit me, but fortunately I was spared that. I was finding day-to-day things hard, but it was manageable. In fact the following day I played in the orchestral concert - a long day of rehearsing and performing, and a demanding programme with some pressure on me as the leader - but in fact it was an extremely uplifting and energising event. Several friends, one of my sisters and my cousin all came to support me, and I felt an exhilaration and satisfaction I haven't experienced for a long time: after weeks of feeling below par and preoccupied by my limited health, performing and celebrating afterwards felt like coming back to life.

However, at the review the following week the doctor expressed concern that my symptoms might be caused by disease progression into the abdomen rather than side-effects, and she requested an urgent scan before the next cycle of chemo. This hadn't occurred to me, and shook me up considerably. Scans are always a big deal, and it was hard not having much chance to prepare myself. I got the results yesterday (my sister Belinda with me for moral support): the good news is that there's no sign the cancer's spread to any other organs, but the bad news is that the existing liver tumours have grown a bit and there are two new ones.

I'd expected there to be some deterioration, as my last scan was done in Germany in early July, and I didn't start chemo till the beginning of September; given that the cancer had been growing before July it was only logical that it would have carried on during the break between treatments. What the scan can't show is whether the growth happened before I started this treatment, or whether it's happened more recently, or continued since September, in spite of it. But the feedback is sufficient to cast doubt on whether the chemo is having any beneficial effect, and therefore whether it's worth continuing with.

The doctor is going to refer this to her team and to the consultant, and I'll have yet another appointment at the end of this week (my fifth in a fortnight). So I'm in a limbo of not knowing yet whether I'll continue on with the current drugs a bit longer or not. The tablets I'm taking can be given intravenously, which might be easier on my stomach, but the disadvantage is that it has to be given over 48 hours: you don't have to stay in hospital but the IV line stays in and you have to carry around a pump dispensing it. Not very nice, but worth it if there's a chance of some positive benefit.

What's more difficult to cope with is that the doctor warned me that if these drugs aren't working there aren't any obvious further treatment options the Marsden can offer. If that's the case, they'd refer me to their research unit in Surrey to see if there are any clinical trials of new drugs which I might be eligible for. These would be very early-stage experimental drugs, and to be honest the thought of that being my only medical option fills me with dread - rightly or wrongly, I see clinical trials as the last resort. I remember back in August I was bracing myself to hear that there were no further treatments available, but since I've been back on chemo I'd slipped back into trusting the doctors and believing they'll always have some answers or suggestions. So even though I don't know for sure whether this will be what's presented to me, facing again the possibility that I've reached the end of the road treatments-wise is very scary and unsettling.

I wasn't sure whether to update the blog while there's no clear answer or plan - I don't want to worry all of you when it's possible that there might be a reasonably straightforward solution - but on the other hand I wanted to share, and feel supported in, this horrible anxious state. Also, as you can imagine, this isn't easy or pleasant to explain to people repeatedly, so saying it here might bypass having to say it so many times in person. I'll still have to update the various practitioners I see (acupuncturist, homeopath, healer, massage therapist etc.) so the more people in my social circle who can find out here, the better, even if it's not the most personal way to let people know. 

I've been up and down as I try to get my head around this. I've been going over and over the possible options, worrying about the potential problems with all of them, trying to work out what might be best, yet also trying to accept that I might not have much choice in this. I'm swinging between fear, going into planning mode (e.g. researching alternative treatments), sadness and disappointment, convincing myself I can still make choices and have some control over things, wondering whether I should be trying to make peace with the situation and not fight against it, reading up on other drugs I want them to consider trying and preparing arguments for them not to give up on me yet, distracting myself with other things, and then starting all over again. In some ways the uncertainty is the hardest thing (for instance, even at the practical level I find it very stressful knowing I might have to cancel things booked for next week, but I can't make plans till I've seen the consultant), but at the same time the uncertainty does provide a very welcome breathing space before I have to deal with whatever the next phase of my life might bring. I'll let you all know when I have more news. 

TWO YEARS ON

It's two years today since I was given my cancer diagnosis. In some ways it seems much longer, in other ways it's gone by very fast. I certainly never expected to be writing a blog two years on...

I knew from the beginning that secondary cancer is deemed incurable, but I never wanted anyone to give me a prognosis, afraid that it might somehow "programme" me to die at the expected time. When I researched cancer of unknown primary (CUP) I was careful not to let myself read any statistics on life expectancy (which sometimes meant closing web pages in a hurry!), but I couldn't fail to realise that the prognosis is generally very poor. It's only now, two years further on, that I've felt safe enough to finish my research and actually confront the statistics. I know that some of you have read up on the nitty-gritty of CUP, and others haven't wanted to know too much, but if you're interested here are some facts and figures: if you'd rather not read them, look away now!

CUP makes up only 2-4% of all cancer diagnoses each year, but is the fourth most common cause of cancer mortality. The reason is that, by definition, it's found when cancer has already metastasised (spread to other organs), most commonly the liver, lungs, bones and / or lymphatic system, so usually surgery isn't an option and treatment can only be palliative (controlling the symptoms for as long as possible). The reason the original site can't be found varies, but is likely to be because the primary tumour: is too small to show up on scans (i.e. is less than a couple of millimetres in diameter); can't be seen because it's obscured by other organs or secondary tumours; or has disappeared due to insufficient blood supply, genetic instability, or being sloughed off (e.g. in the digestive tract). However, since it's already spread to another part of the body, the damage is already done.

Treatment of secondary cancer is the same as for primary tumours (so, for example, breast cancer which has spread to the bones will be treated with breast cancer drugs, not bone cancer drugs). Because the site of the original tumour isn't known, treatment is much more complicated for CUP, and involves piecing together pathology reports, ambiguities on scans, tumour markers in the blood which can sometimes indicate the likely location that malignant cells have come from, and, frankly, guesswork, to decide on a treatment plan. The difficulty in finding the appropriate treatment, and the relatively high average age at diagnosis  (59-66), added to the advanced state of disease at diagnosis, all contribute to a very short prognosis. Life expectancy seems not to have varied much in the past decade, with studies showing an average survival of between 2-11 months from diagnosis, and around 10-15% of patients surviving 5 years.

My doctors at the Royal Marsden initially felt that the most likely source of my cancer was the pancreas (for which life expectancy is less than a year, with only 5% surviving 5 years), and then amended that to the bile duct. Bile duct cancer is one of the rarest types, and because it's usually only discovered when there are serious symptoms, life expectancy isn't much better: 2 years for those who are operable, and 2-10 months for those who aren't, with 5% surviving at 5 years.

So my assumption that I would only last a few months wasn't completely unfounded - it was odd how I knew it even while I didn't let myself think about it. However, alongside believing I would probably die quite quickly, I was well aware that I was significantly younger than most people diagnosed with CUP; only one organ (my liver) was involved; I had no other health problems, unlike some older people; and for any average statistics there are always outliers who do much better (as well as much worse) than expected. In some ways the unknown nature of my disease helped me to cope, by allowing me to convince myself that the grim statistics I refused to find out too much about mightn't necessarily apply to me. In particular, even if my primary tumour was / had been in the pancreas or bile duct, it clearly hadn't behaved in a typical way (growing bigger and bigger before spreading), so I took some comfort in hoping that I might continue to nonplus the medical expectations.

All the same, it feels like a huge achievement to be writing this two years on. Admittedly I get pretty weary at times from the chemo, but (touch wood) I'm relatively fit and healthy, I'm not in any pain, and my body is generally functioning satisfactorily. It seems incredible, and whether or not I can claim any credit for it, or whether it's just luck, I'm not sure. Many of you have told me how well you think I'm doing, and congratulated me on my efforts (through alternative therapies, diet, supplements and attitude): it's lovely to be congratulated and of course I want you all to be happy and pleased for me. 

However, I'm wary of me, or anyone else, assuming that just because I've done much better than expected, it means I'm out of the woods now, or that I'm somehow immune to the usual trajectory of cancer, or that if I've survived this far then I must have it in my power to fend it off indefinitely. I think at first I hung onto a hope that if I could just make it to a year, or two, or five, or whatever, I would somehow have outwitted the cancer and beaten the odds. For a while it was comforting to think that way - that it was in my control to decide I'd get the better of cancer, and that there might come a point when I could relax and not need to worry any longer - but it now makes me rather uneasy. It sets me up for feeling a failure if and when anything deteriorates: it'd be bad enough knowing that people were sad and worried about me, without the additional layer of surprise ("but she was doing so well!") which could so easily feel like a reproach ("why did you stop doing so well?"). In addition, two friends who I met at the clinic in Germany, who when I met them were like me in seeming normal and well, with lots of energy and positivity, have died in the last couple of months, and that's hit me hard - not just losing the friendships and supportive email contact, but the realisation that doing well for a period of time doesn't guarantee anything about the future. I'm slowly and painfully coming to accept that all of us have a finite amount of time here, and it's a case of how long we have, and what quality, rather than whether we can "beat the system" altogether. 

It seems as though this mindset, recognising the fragility of life, should mean that I'm extremely grateful for every day. Every cancer survivor's memoir I've read (quite a few!) follows this narrative of facing death, realising what's truly important, changing your life in some dramatic way, and thereafter appreciating every single thing and living entirely in the moment. I particularly feel it today, that I should be celebrating and humble and awed at the beauty of being alive. So I'm a bit ashamed to admit that I'm not as grateful as I feel I ought to be - I've found it very hard to change my mindset and truly be thankful for what I have, rather than continuing to get annoyed and stressed by little things, as well as railing against the big things like the limitations of being on chemo, and resenting not being able to take the future for granted as most people do (and as I used to do). It's difficult getting a balance between living a "normal" life and looking for some epiphany, and I can't pretend to have reached any comfortable position on this (especially as it's easy to worry about not being thankful enough - "I've got to reach a state of eternal gratitude or I won't ever heal!"). 

In my down times, it feels as though since being diagnosed my life has shrunk to nothing more than attending health appointments and treatments, following the right diet, taking numerous supplements, and doing all the things I believe I'm supposed to do to stay healthy for as long as possible. Even bleaker, it can sometimes feel as if that's all I have to look forward to in the future too - a life dominated by preoccupation with my health and coming to terms with the differences between now and my previous lifestyle.

But I do know it's not true that I've only been being a cancer patient - even if it sometimes feels that way - so, in the spirit of reminding myself what I have gained through staying alive since last November, and hopefully getting closer to appreciating the preciousness of still being here: 

In the past year I'm lucky enough to have gone skiing twice, which feels like a miracle; I've had lovely stays with friends in Belgium, Switzerland, Edinburgh, and other parts of the UK; I've gone to a number of exhibitions, concerts, plays, and a hilarious session of karaoke. I've played in four concerts and a chamber weekend away (continuing to be very involved in the admin and running of the orchestra, which has felt important to maintain), and played eight Beethoven symphonies in a day (tiring, but extremely satisfying). I spent a fantastic holiday in Greece on a self-development course (and did have some epiphanies there, despite my gloomy previous complaints!). I completed a distance learning Post-Graduate Certificate in Humanitarian Work, which I'd started in September 2010 and put on hold after I was diagnosed: it was a matter of pride to finish it, although it was quite a lot of work, and it felt good to do something which used my intellect. I had six 10-day stays at the German clinic, making two side trips with friends to Cologne and Heidelberg in order to broaden my view of Germany and to turn the treatments into an opportunity for something more pleasant. I've had new cupboard doors and shelves built in my flat, reorganised my filing and storage systems, and set up my spare bedroom as an office space, and continue to make plans for further improvements as soon as I have the energy.

All these I guess are significant achievements, but most important of course is having spent time with people, especially my immediate and extended family, and in particular watching my nieces and nephews grow and develop: I've really enjoyed taking some or all of them ice-skating, horse-riding, to Legoland, films and the theatre over this past year, as well as seeing them all very regularly. Particularly as I don't have children of my own, it means an enormous amount to me to be involved in their lives, and to have the chance to build relationships with them which they'll remember positively - an extra year of memories makes a huge difference. Spending time with friends has similarly been incredibly nourishing, enjoyable, and supportive (including catching up with some friends who I hadn't seen for years), and I've been amazed at how committed to me many people are. 

So although I can't always connect to it, I know I do have a great deal to be thankful for. I've found it surprisingly moving to document what this last year has given me, and I feel far more appreciative of my life now than when I started writing, which is a much more comfortable place to be. I know that none of know what the future holds for us, regardless of what we plan or imagine, and I realise that, even when I feel a bit alienated from "normal" people doing ordinary things, in many ways I'm more similar to people without cancer than I am different from them. I know that, even though I often find it hard at the moment, the only way to approach leading a satisfying life is to make the most of right now and to focus on what's important. So even though I can't always achieve it, I suppose I feel fairly clear what I'm aiming for.

I'm not sure what this will be like to read - it feels rather muddled and I'm not really sure what my point is. But maybe that doesn't matter too much. I do have some photos to upload, but this post is long enough already so I'll save them for another - more upbeat! - post. Thank you all so much for your patience in bearing with me through this process, and for taking an interest in me and my well-being.

BACK ON TRACK (NEARLY)

I'm glad to say that once I was out of hospital I recovered reasonably quickly. Although I'd done nothing but lie in bed all day, I was pretty exhausted, both by the round-the-clock diarrhoea and the incongruous mixture of nothing happening and constant interruption that makes up hospital life.

So after a few days' relaxed convalescence at my sister's, being wonderfully pampered and loving having some normality again, I came back to my own flat, and slowly got on top of the accumulated emails and admin. I got myself registered for internet ordering and delivery of supermarket shopping, which takes the physical effort out of shopping, and bit by bit built my strength up again. Friends and family have been great in visiting, helping me with cooking and washing up, going for gentle walks with me, and boosting my morale with phone calls, texts, emails and a wonderful array of flowers - thank you so much to everyone who's been so supportive.

Just some of the beautiful flowers that have been cheering up my flat

I returned to the Marsden at the beginning of the week, and they recommended reducing the dose of both chemo drugs to 75%, to make it less taxing on my body (and in particular on my immune system - although all chemo can affect the white blood cell production, you wouldn't generally expect the first dose to knock out the whole immune function as comprehensively as happened with me). They also prescribed some injections which stimulate the bone marrow to produce more white blood cells and thereby bolster the immune system. I'll inject myself with these mid-cycle - I've been doing sub-cutaneous injections of a naturopathic remedy from the German clinic for more than a year, so I'm pretty used to the process (although it's not exactly something I look forward to). 

(Not such a bad idea....)

So I started on cycle 2 on Tuesday (2 weeks delayed because of the hospital admission), and I'm very relieved to report that it's been much less punishing than the first cycle. I've felt a bit weary, but nowhere near as exhausted as I felt a month ago, and the tingling and sensitivity to cold hasn't been as bad either. It did feel quite daunting to start chemo again, especially when I'm still not back to 100%, but on the other hand I didn't want to leave too long an interval without treatment, given that the tumours were growing over the summer. I'm trying not to anticipate how it will be over the next couple of weeks - either desperately hoping it'll be OK, or dreading it being like the last cycle - as neither of those seem very helpful ways to approach things. 

Emotionally it's been a bit mixed. When I was in hospital I felt too lousy to really care about very much - I certainly wasn't well enough to feel bored or to be concerned with how long I'd be there - but I accepted that I needed to be there and that this bout of illness was simply something I'd have to ride out. I was really pleased about that, because when I was admitted to the Marsden in June 2011 it was very different: I so didn't want to be there that I was in denial that there was really anything wrong, despite being in acute pain, with a very inflamed abdomen and a spiking temperature. With hindsight, I was absolutely terrified of being properly ill, and just would not let myself believe I really was. The result was that I was quite bolshy, argued with the doctors about every intervention, and felt outraged that I was being kept in when I didn't feel too bad. I determinedly sat on the chair beside the bed all day, rather than staying in bed, as though to prove that I wasn't really ill. However (of course) these defence mechanisms all collapsed eventually when I realised the reason they were being so careful was that any complications could have been very serious, if not life-threatening; and I then spent a few days feeling extremely scared and vulnerable. 

So I can see how much progress I've made in coming to terms with my situation over the past year, that this time round I viewed it as "unpleasant but that's just how it is", instead of railing against reality. I also wasn't scared of the implications of being in hospital - I knew that although viruses can be very nasty and I was extremely weak for a while, they're self-limiting and I wasn't in any danger, and my symptoms were related to the chemo rather than any progression of the cancer. It amazed me how much easier it was to bear the discomfort and unpleasantness of being unwell when I wasn't simultaneously frightened, trying to convince myself that things weren't really how they seemed, or angry and frustrated because I didn't want things to be as they were.

So finding some greater equanimity felt like a real achievement. However, as I recovered I've found it hard accepting that I still need to take things easy and limit how much I do. I guess when you're ill it's very clear that you're not up to doing your usual routine, as you don't even want to; but now that I'm back in the category of "basically well, but under par" I've found it very galling to have to be sensible and only book in 1 or 2 things to do each day. And at times I've felt very sad about not being able to be my previous carefree self, who packed loads into life and chose what I wanted to do, without having to think "no, I'll need to rest". It also feels really tough at times not knowing how long I'll be on this chemo for (it will depend whether it's working or not), and not be able to plan trips away without wondering if it's realistic or whether I'll end up having to cancel. So I'm struggling a bit at the moment. But overall I'm focusing on trying to let go of wanting / needing that illusion of control and certainty, and instead just take things a day at a time. It sounds so simple, but I'm discovering it takes real skill!

What do you mean your crystal ball can only see one day at a time?