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.