CHRISTMAS GREETINGS!

I've opted make life easier on myself by not writing Christmas cards this year - I hope you'll forgive the lack of personalised communication. A number of people have told me that they like the blog and have found it a useful way of keeping up to date with what's happening with me, so although of course I don't know how others find it, I hope that it doesn't feel too impersonal a medium for a Christmas message. 


I've been very moved by all your comments on the blog - what lovely people you are! - as well as your emails and other messages of support. It means a huge amount to me and has made me feel extremely cared about. I guess life-threatening illness (or any crisis) can be very isolating, since no-one else can know exactly how you feel, and sometimes writing the blog feels a bit lonely as there's no way of knowing whether people will read it or what they'll think, so getting your feedback has been very reassuring and encouraging. And I've been amazed to realise just how many people have been concerned about me - not just those who are close in my everyday life, but extended family, colleagues from work and my professional networks, and friends and acquaintances from school, university, travelling, orchestras past and present, group holidays, the clinic... It's made me appreciate how we can be touched, even in small ways, by everyone we come across, and that all kinds of relationships with other people - personal, professional, social, incidental - go into making our experiences, and our sense of ourselves, what they are. I feel very blessed to have so many people take an interest in me and wish me well, and although I've been pretty rubbish at saying it individually, I'm overawed by that, and can't thank you enough.


In terms of my plans for Christmas: in spite of being newly retired on health grounds (or actually, in defiance of it!), I'm now off for a week's skiing in Val d'Isere, and am incredibly excited about it. Skiing has long been a passion of mine, and when I had to cancel a ski trip in January 2010 (I'd just started chemo, and besides was feeling pretty weak), I was gutted to think I probably wouldn't ski again. My next trip to Germany is just after New Year, which is a slightly longer window between treatments than usual, so this was the perfect opportunity to go. Plus I'm very aware of the importance of seizing the moment while I'm well enough. So although I'm prepared to take things as gently as I need to, I'm thrilled to be going.


When I get back I'll be spending Christmas with my sisters and their families, my father and his wife - all the Kapps together - and am really looking forward to it. I wish all of you a wonderful Christmas - I hope that wherever you are and whoever you spend it with, it will be full of warmth and affection and fun. Whether for you it's a spiritual occasion, or a welcome break from work, or a reunion with family and friends, or a chance to indulge and kick back, I wish you and those who are close to you all happiness, health and good cheer for both Christmas and the New Year. May 2012 bring joy to all of us!


Much love to you all, Sylvia 

WORK UPDATE

I've been very lucky to have generous sick leave (6 months on full pay followed by 6 months on half pay) from my job as a clinical psychologist. A locum has been covering part of my post, but as the 1-year mark came round I had to decide whether or not to return to work, and after a lot of thought, I've decided not to. A significant part of the job is doing therapy, which means committing to however long clients need (often up to 3 or 4 months), and I simply don't feel able to plan that far ahead on a continuous basis - although I'm feeling pretty well at the moment, I know things could change at any time. And the idea of reducing my duties to admin only, and not doing any therapy - which for me is the most interesting and rewarding part of the role - was soul-destroying. 


It was a tough decision not to go back, as I've been there for 7 years and at the beginning I absolutely loved it and really felt that I'd found my niche. However, there wasn't really any opportunity for promotion, which had been getting me down, and I think I'd probably got just about as much as I could from it. So although I'm sad to be no longer part of the clinic, and to say goodbye to colleagues who I've loved working with, it also feels good to recognise that things have changed and it's time to move on. At my leaving do I was very touched by the support and good wishes from my colleagues, many of whom have become good friends, and in spite of its poignancy it was a really nice way of marking the end of my time there.


Because of the uncertainty of my situation, it doesn't feel feasible to look for another job. I'm spending nearly 2 weeks out of every 5 in Germany at the moment, as well as needing to fit in my other alternative therapy appointments. In addition, I'm certain that one reason I'm doing well at the moment is because I've reduced the amount of stress in my life, and by not working I have the flexibility to rest and pace myself as I need to.


So I've decided to take medical retirement, which essentially means that I'm claiming my pension early. It doesn't rule out working in the future if I'm up to it, and if I find something which can fit around my treatments, but it means I'll have some income. In addition, with the help of an adviser at one of the cancer charities I've been granted some benefits - Disability Living Allowance (which isn't means-tested) and Employment and Support Allowance. I've found it extremely hard to come to terms with being entitled to them: partly because I feel fairly well and therefore guilty about claiming public money; partly because I'd never expected to need benefits and it's an enormous shift in how I see myself (especially as I've been used to being a professional helping others with claiming benefits, so it's very odd now being one of those people myself); and partly because qualifying for these benefits despite my current relatively good state of health is an unwelcome reality check on how the medical profession views my prognosis. So it's been a tricky process, to be pragmatic about accepting financial help with the costs involved in managing a serious health condition, while not writing myself off in my own mind. However, it gives me the flexibility to continue looking after my health as I've been doing throughout this last year, and now that I've got used to it to some extent I'm very grateful to have that stability.

TREATMENT UPDATE

After my jaunt to Cologne, the rest of my stay at the Herzog clinic went very well. I've uploaded some pictures to give you a flavour of the treatments there:

Local hyperthermia was for an hour every day, with a heating plate positioned over the liver, alternately from the front  and the side. I had oxygen at the same time, via a tube in my nostrils, to enhance cell functioning.

There were also daily intravenous infusions of vitamins and various naturopathic remedies, to stimulate the immune system and to help cells detox from the chemo - you can see the bottle hung on the stand. 


Although sometimes the heat became a bit uncomfortable, mostly I found the hyperthermia very relaxing, and I generally spent the time listening to music on my iPod.

Twice a week I had ozone therapy - this involves taking about 50 ml of blood into a small container, adding ozone, and shaking (like a cocktail shaker!) to mix it into the blood. This oxygenates the blood (you can see it turn from dark red to bright scarlet), and it is then released back into the vein. Higher oxygen levels in the body inhibit tumour growth and improve the respiration of healthy cells.

Magnetic field therapy was three times a week, and consisted of lying with a cylinder positioned around the tumour area, within which a magnetic current circulates for 20 minutes. The aim of this is to improve metabolic functioning, reduce over-acidity of cells, and stimulate healing. The effect is subtle but produces a feeling of calm alertness and well-being.

I haven't included photos of the back massages or reflexology (you know what those look like), or the chemoembolisation (I reckon that a picture of a catheter being inserted into my groin would be too much information!) The chemoembolisation went well and the feedback from the surgeon was again encouraging, with a little more tumour shrinkage and indications that the tumour is less aggressive. As I understand it, there's generally a ceiling effect for how much improvement this kind of chemo can bring about, but it's certainly buying time and quality of life at the moment. My next treatment will be in early January.


In between all the treatments it was lovely to catch up with old friends Linda (from my first visit in July) and Hilary (whose stays coincided with mine in September and October as well), plus making new friends including Cathy from the USA and her husband Dick (who are both professional musicians, and I loved hearing about the world of pro symphony orchestras). As well as meeting a range of really nice people, the clinic is somewhere where I feel "normal", where people aren't freaked out by cancer and don't mind talking about the grittier stuff, and where there's a great deal of camaraderie and support. It's a self-contained little world there, and although I find the transitions between the clinic and my London life quite challenging at times, it always feels safe and reassuring to be there. And, hard though it might be to imagine, we do also have fun sometimes! 

Cathy and Dick in the dining room

Linda and I with Manuela, one of the nurses

With Linda and Hilary

WEEKEND IN COLOGNE

I took advantage of being back at the clinic to have a weekend away with my old schoolfriend Catherine and see a bit more of Germany (there are no treatments on Sundays so it's generally pretty quiet at weekends). Catherine lives in Brussels so we arranged to meet in Cologne, roughly half-way between us and about two and a half hours by train from Bad Salzhausen (despite two changes, a very easy journey, thanks to the efficient German railway system). My friend Linda from Australia, a fellow patient who I'd met in July and who was back at the clinic as well, was also meeting a friend for the weekend further up the line, so we travelled together, all excited and giggly as if we were playing truant! 

Cologne's landmark cathedral, surrounded by Christmas markets

In the old town

One of the many historic breweries

Evening skyline from our hotel window

It was lovely to see Catherine, and we spent our time wandering around the old town and along the river, hanging out in cafes, catching up and talking late into the night. The Christmas markets were just starting up, the squares were lavishly decorated, and there was a great atmosphere.

Christmas lights

Even when it's alcohol-free, a beer's still a treat!

Although it was just for one night, it was great to break up the stay at the clinic with something fun, and I came back feeling like I'd had a mini-holiday. I keep saying I really must learn some German, but somehow I never seem to get past, "sprechen Sie Englisch?" - so it was great having Catherine as interpreter (although not so much of a holiday for her!)

A YEAR ON

Sorry, there are no nice pictures on this post! It's a year ago today that I got my diagnosis, and I've found myself going over it all in my mind. I don't know if the details of that time are something that people want to read, but I feel some kind of need to tell the story, contradictions and all - perhaps partly because at the time I couldn't put into words a lot of what I was feeling and thinking, and it's only now that it feels possible. 


I'd had a CT scan the previous week and been told to come back in 6 weeks for the results, but 5 days later I got a phone call from a specialist nurse asking me to come for a biopsy. I knew that meant there must be cause for concern, and I was very scared. I went in for the biopsy 3 days later, and was met by the nurse, who told me the scan clearly showed metastases (secondary cancer) in the liver. The biopsy was to try and determine where they'd come from. 


It was the most awful news to hear, but it wasn't a complete shock - I think I'd known since the phone call that it had to be cancer. I had a lot of time to digest it, as although the biopsy was a fairly quick procedure there was a lot of waiting around first, and I had to stay under observation for 6 hours afterwards (because of the risk of bleeding). By the time that had ended it was too late to discharge me so I spent the night on a ward. In hospital you're in public all the time, so I didn't feel I could cry - instead I kind of held it all together by working out what on earth I would do. Perhaps also being on my own I didn't dare give in to my emotions in case I lost control completely. I decided I would only tell my sisters and father straight away, and that I'd give myself a week's grace, until after the results appointment, before telling close friends and work. I wasn't at all sure whether and how to tell all my various friends, relatives, colleagues and acquaintances (a huge number when I added them all up), but I did at least end up with a plan of how to get through the next couple of weeks. I eventually got discharged at midday, went home for a shower, and went straight into work for the afternoon, which was actually an enormous relief, as I could focus on other things and feel vaguely normal again.


But I knew straight away that I couldn't deal with the diagnosis while trying to maintain my work role - or cope with work while trying to take in the diagnosis - so it felt very clear that I needed to stop work once the chemo began. I coped over the next few weeks by being extremely focused on tying things up in my job, winding up therapy with all my clients, and handing over everything else which I couldn't finish in that time - I reluctantly delegated running a workshop, presenting at a national conference, and leading a concert, all of which I was due to do in the following weeks - and it felt as though a phase of my life was all-too-abruptly ending. What I didn't tell anyone was that I assumed I hadn't long to live - my mother only survived for 3 months after being diagnosed with secondary cancer in the liver, and I imagined it would be the same for me. I was never given a prognosis in terms of time (and I would have shouted down anyone who tried to predict it), but as I researched cancer of unknown primary (and later cancer in the bile duct) I couldn't help coming across the very poor outcomes. In addition, the doctors didn't want me to delay starting chemo even by a week, and in spite of their calm measured manner outwardly I picked up their sense of urgency, which was very frightening. Although I didn't articulate it to myself at the time, with hindsight I informed a lot of my acquaintances basically because I didn't want them to find out later that I'd died without them knowing I was ill.


However at another level I couldn't really believe I was dying, as I felt reasonably OK, and there was no question in my mind that I would do everything possible to improve my chances. I held onto the fact that statistics only give average outcomes, and there are always outliers who do much better than expected, and I focused completely on being one of those exceptions. As time went on, and I discovered that chemo was manageable (and, significantly, once I'd passed the 3 month point), I started to think perhaps I'd been melodramatic and misguided in fearing the worst. Although I was relieved to be feeling fairly normal, it was confusing having such a serious condition without any major change in my day-to-day functioning. It wasn't until I met Dr Herzog in June, and described my symptoms at the time of diagnosis, that he gave me some perspective by saying that if I hadn't had treatment when I did - or if they hadn't immediately managed to find a combination of drugs that worked - I would certainly not be alive now. He repeated this at my last visit: given the extent of the disease a year ago, and the aggressiveness of it, without treatment I would definitely be dead by now.


Oddly that's been reassuring to hear, as it validated my sense of how serious my situation had been (though, till recently, it felt like it would somehow have been tempting fate to put it into words). All the same, it's very hard to get my head round how lucky I've been - to respond to the initial chemo, to buy enough time to investigate a range of therapies, and to find a combination of conventional and alternative treatments which - at the moment - seems to be keeping things stable. (And of course I'm extremely lucky to be able to afford the clinic in Germany.) Superstitiously, it was only a few weeks ago that I let myself believe I would really make it to a year - and I certainly would have never imagined I'd do so in a pretty good state of health. Of course I know that things could change at any time, but all the same it's pretty incredible. In fact it's almost too big to take in at the moment - perhaps I'm still afraid of jinxing myself if I were to feel too pleased! - but it seems extremely important to fully appreciate and feel grateful for being alive and able to do most of the things I enjoy.


I don't know what this will be like to read - presumably some people will have known the seriousness of it all at the time, others perhaps not so much. But it's not easy to talk about in person (existential matters don't make very comfortable social conversation!), so it feels important to say it here. And the other thing I want to say is how blown away I've been by all the support and love I've been offered in this last year. A lot of the time I've found it quite hard to deal with - either because it reinforces how shocked and upset people have been for me, or because I haven't wanted to acknowledge that I need any help, or because I haven't really known what anyone else can do - but I am still extremely grateful for those expressions of caring. Thank you all so much. 

ROUND THREE

I've returned for my third trip to the Herzog clinic, another 10-day stay. It's been lovely to re-meet some of the people I'd met before, as well as some new faces, and once again I've had some interesting and stimulating conversations. However I've also been happy to spend time on my own - reading, listening to music, writing in my journal, walking - and I've been a bit more contemplative this time than on previous visits. In London I always feel busy and pressured for time, especially since the summer when I've only had 3 weeks in between clinic visits, with lots to fit into those weeks, so it's been quite precious to be able to slow down a bit. The surroundings here are very peaceful and therapeutic, especially in the beautiful autumn weather we've had. In particular, there's lots of water, including fountains, ponds and a large installation of mineral waters flowing down over brushwood, giving off salt-laden air to inhale. I'm not sure exactly what health benefits it's supposed to yield, but it's certainly a very soothing and relaxing place. 

I had another chemoembolisation in the middle of the trip. As usual, there was a great deal of waiting around over a long and tiring day, but I was pleased to find that I was able to let go of my habitual impatience and simply accept that it would take as long as it took. Physically I found it easier to tolerate than the previous times, and I think that being in a calmer state of mind helped me to be less bothered by the discomfort and unpleasantness of the procedure. I recovered my energy very quickly the following day, no doubt helped by being given steroids, but the downside of that is hot flushes and difficulty sleeping - fortunately wearing off after a couple of days. Like last time, I'm pleased to say that there seems to have been a small improvement in the tumours, so the plan is to return for the next procedure in the second half of November. 


This time I was an out-patient for the whole visit, staying at a (different) guesthouse towards the other side of the village. I enjoyed having somewhere a bit more homely to come back to in the evenings, though the walk there and back was already getting quite bracing - definitely a touch of winter on the way!

My guesthouse

Frost in the early morning

Autumnal tree at sunrise

SECOND VISIT TO GERMANY

I'm just completing my second, 10-day, stay at the clinic. It's been a bit of a mixed experience: on my first visit there I got quite a buzz from the novelty and excitement of discovering all these new treatments and talking about cancer for the first time with other people going through it - this time hasn't been quite like that, and although in lots of ways it's been great being an "old hand", it's different from that initial enthusiasm.


Sadly, 4 people I met last time have since died, which is hard to deal with. I think it's essential not to rule out hope for better outcomes than the statistics suggest (since each person responds to treatment differently and no-one can predict exactly what will happen for you personally), but all the same, accepting that the spectacular outcomes are few and far between, and that controlling the cancer for as long as possible is an ongoing commitment, is tough to get your head around. Most patients I've talked to initially hoped, like I did, that coming to the clinic would be just a one-off visit, with no need for anything further afterwards, but in fact it's just the same as it would be with any doctor: follow-up is a longterm and continuous process. Even people who are in remission come back here for regular maintenance treatments. So I'm beginning to realise that coming here will be part of my life from now on, and adjusting myself to that.


However, there have been some really good things from this visit too. It's been much easier coming back to somewhere familiar, knowing how everything works (which takes some time at the beginning!) and already knowing the (lovely) staff. I've re-met quite a few people here from last time, and it's really nice catching up with them - they're like old friends. There's a British woman here who, we discovered, went to the same school as I did (Brighton and Hove High, albeit 20 years before me), worked for a while in the same firm of consulting engineers as my father worked for, and has nieces who used to be Brownies and remember my mother! - it's been lovely finding these connections. And I've had some really interesting, stimulating, warming and fun conversations - it might sound weird that it can be so enjoyable here, but the majority of the time that's the case.

This time I stayed in one of the clinic rooms for the first 5 days and then, after a day or two recovering from the chemo, moved out to a nearby guesthouse and had the rest of the treatment as an out-patient, which works out a bit cheaper. I spend most of the day at the clinic anyhow, so it's still just as sociable, but I quite like being able to leave the building and go somewhere different at the end of the day. (And it's nice not being woken at the crack of dawn to have your blood pressure taken every morning!)

My room at the guesthouse

View from my bathroom window over the main street

In terms of treatment, as well as the daily hyperthermia and infusions, I had a second chemoembolisation procedure last week. I tolerated it better this time - I still felt pretty rough physically for a few hours, but I wasn't sick, and was much less groggy mentally. I'm sure it helped that I knew what to expect and was better prepared. I bounced back fairly quickly too - you have to take it easy for a couple of days, but 3 days afterwards a few of us hired bikes and went on a 25 km ride around local villages, among beautiful rolling countryside. It was lovely and I really enjoyed it. 

The following day I went to the thermal baths and swam gentle laps in between relaxing and floating in the wonderful salty water; since then I've made use of the clinic gym, and gone for a couple of runs in the park - my energy levels have been good and I feel better both physically and psychologically when I exercise.

Route of my morning run

The scans show a small improvement (which is encouraging, since treatment is seen as successful if it holds things stable), so the plan is to continue with a few more procedures at approximately 5-weekly intervals (staying for around 10 days each time), and see how things go. My next stay will be in mid-October, which doesn't feel very far away, but it's reassuring to have a structure for the next couple of months. And although there's lots I want to fit in at home before my return, feeling busy and focussed is definitely good!